Please Write and support the Deep Sequence Research Project of Dr. Ian Lipkin

For all those who support the deep sequencing research project by Dr. Ian Lipkin, please write to the following people indicating that the majority of the ME/CFS patient community appreciates the fact that the world renown virus hunter Dr. Ian Lipkin is willing to research for a cause on behalf of the ME/CFS patient community. Now, for once, we might find the cause for ME/CFS. This could be the breakthrough we have all been waiting for. Do you support Mikovits or are you willing to let Dr. Ian Lipkin with the most sophisticated lab and technology in the world to take a look and see if he can find the pathogen causing ME/CFS? He stated at his talk at the WPI this summer that he can find the pathogen that is causing ME/CFS!

Moderator: Inflammatory and insulting comments removed

So for others who disagree with the negative message of demanding a halt, please write and show your appreciation on behalf of the patient community that a researcher with Dr. Lipkin's reputation is willing to search for a cause for your illness and that this time we might find an answer.

Please write your letters of appreciation supporting Dr. Ian Lipkin's research in finding a cause for this illness to the addresses below. Please mention the fact that you are a citizen of the United States and as a citizen/taxpayer only you have the Constitutional right to address any concerns involving a U.S. Agency of government.

Francis Collins is director of the National Institutes of Health, Bethesda, Maryland 20892, USA. Email: francis.collins@nih.gov

You seem to be very well connected and have access to all kinds of important people.

Do you mind taking a moment to please explain who you are, and why you are putting so much effort in to XMRV research please? Maybe that will help everybody understand why your advocacy efforts should be supported.

Thanks,
markmc20001

You also said this, and I've included the complete post below for reference.

"You have no idea how this has destroyed researching for a cause for this illness. You have no idea how much energy, time and finances that I put into this only to have it blow up in my face by a few malcontents."

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This is very sad what I have to report. I just talked to a preeminent retrovirologist that just came back from the recent CROI conference in Amsterdam. The talk among the worlds leading retrovirologists was concentrated on the BWG Results, XMRV and the Mikovits story. As far as they are concern XMRV is DEAD, HGRV is DEAD. The BWG did not find HGRV nor did Alter/Lo. Can't talk about Ruscetti but you will find out in the next few weeks about his work but for them, it's over!

Now here is the kicker. They strongly believe -Remember these are the leading world retrovirologists- that the antics of a few antagonists or militants on a certain forum who have Vilified, Libeled and Defamed their Character, their Reputation and their Work repeatedly, represents the majority of ME/CFS community. As a result of this Vitriolic assault on them, they have no desire whatsoever to ever conduct research on whether there is a retrovirus associated with this illness! What is even worse, some are now convinced there is a psycho-somatic disorder or component within ME/CFS patients.

For the few that have engaged in this awful strategy, it didn't work so you should be pleased with yourselves that you destroyed the attitude and the good will of the world's leading retrovirologists toward the ME/CFS patient community. Give your self a round of applause...hear,hear

Remember the thread on Mikovits winning the debate at the recent Ottawa conference and everyone was cheering. Did you look at the body language of Coffin at that conference. His body language expressed what the retrovirology community thinks about science behind Mikovits. Go look at the video.

Now the ME/CFS community is left without any retrovirolgist that will investigate on whether there is retrovirus associated with this illness. If you think Mikovits will be able to help, think again. You can turn out the lights. Research funding will be all but impossible to find. You don't bite the hand that feeds you is a good idiom to state in this case. For all those who employed that strategy, it backfired...Big Time!

People want to be appreciated. You don't attack them personally and expect them then, to turn around and want to help you out. It almost feels like a deliberate sabotage on the part of few for whatever reason. Many won't believe me again and state these are unsubstantiated rumors. Go right ahead and believe it and live in your bubble. You will find out soon enough. But I can tell you that there will be a sound of crickets chirping in all the labs across America as the searching for a retrovirus cause for this illness comes to an end.

It is sad that a group of foreigners who are not taxpaying citizens of this country can expect to voice their opinion on how the American government and researchers of this country should operate. They have absolutely no legal voice on how taxpayer dollars should be funded among the various U.S. institutions of this government. They need to refocus their own energies, within their own government research institutes, to find a cure for this illness and not blame our government for their failed strategies within their own advocacy groups back home. I'm out of here.

Many can't accept the truth. Reminds me of the attitude of many of the American Idol contestants who think they can sing. They live in their own perception of reality. I know a few will take exception to what I have said and I will get blame for the tone or harshness of this message too bad...much was lost, when so much could have been gained. I worked the back channels within the research community. If only a few strident voices had shut their mouths. In the end, the researchers were right concerning XMRV and the contamination. You have no idea how this has destroyed researching for a cause for this illness. You have no idea how much energy, time and finances that I put into this only to have it blow up in my face by a few malcontents. One angry and fed up sheep. Goodbye! ....clapping in the background.

I'm entirely supportive of the deep sequencing research... but is there a danger that we're just going to be pestering researchers with e-mails (supportive or otherwise?).

I got the impression that it was about 5 patients who were opposed to this research - isn't that about a number we could safely ignore?

To all those from the UK, since you are not citizens or taxpayers of the United States, your letters have no affect on trying to derail or sabotage this study with the NIH. It's not going to work. My Senator and her staff who sits on the appropriation committee which funds DHSS are well aware of your tactics and is looking into this matter for me.

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From all those in the UK: we're not all the same. **** Moderator: deleted; rudeness

To all those from the UK, since you are not citizens or taxpayers of the United States, your letters have no affect on trying to derail or sabotage this study with the NIH. It's not going to work. My Senator and her staff who sits on the appropriation committee which funds DHSS are well aware of your tactics and is looking into this matter for me.

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Im from the UK, and the majority of us support Lipkin and his work, in both the studies he is conducting!! As indeed, most people do!

I agree that it is madness to want to stop people as reputable and expert as Lipkin working on our illness. There is no one better. If there is a cause he will want to find it, everything else aside, its the kind of thing that wins you nobel prices! "the guy who found the cause of an illness affecting 3 million plus people around the globe" so he has personal motivation to find something, even if nothing else. I know people are scared, but please stop and think it through for a minute, hold back your fears and give him a chance. I believe Lipkin will find the cause of our illness, and gthen we can all get well and get on with our life - i for one have lost too much of my life to this illness, to let a few bad apples spoil my best chance of an eventual cure!

If he didnt think he had a great chance of finding the cause, he would just have given up after the first retroviral study, but instead now that that looks unlikely to work out, he has made sure he has a chance to look broader into the possible cause, doing this deep sequencing as well.

Personally, I've been very disapointed with a small minority of people who seem to want to attack him, i honestly dont get it. If it was Weasley doing the trials then i would understand, but this is someone new who so far has done nothing to damage us. Please give the guy a chance.

Regarding showing our support for Lipkin, there is another thread on here about an e-card that is being organised so that we can collectively send him one big thank you. Thats a great idea as it shows our support without dumping lots of emails in his inbox.

FWIW, I've reported Ecoclimber's comment. It's inflammatory, attacking named individuals and anyone who DARES think they have arguments of any merit, or who DARE to belong to another forum (the shock! the horror!)and it's misrepresentative of people's concerns.

This sort of bullying is breaking forum rules, big time. How can people discuss things in a collegial, rational manner with THIs sort of behaviour?

While, I am certainly supportive of Dr. Lipkin's research, I don't really know about sending letters one way or another. I'm not saying don't send letters, nor don't have an opinion but there is something about this that bothers me and I can't quite put my finger on it.

Maybe it has to do with the mindset that science is a popularity contest and it isn't?

Don't know, I am having a foggy day. :>)

Just sayin.

ETA Nor does this mean I won't sign a card or send a positive message to Dr. Lipkin. Just some thoughts rolling around in my head.

While, I am certainly supportive of Dr. Lipkin's research, I don't really know about sending letters one way or another. I'm not saying don't send letters, nor don't have an opinion but there is something about this that bothers me and I can't quite put my finger on it.

Maybe it has to do with the mindset that science is a popularity contest and it isn't?

Don't know, I am having a foggy day. :>)

Just sayin.

ETA Nor does this mean I won't sign a card or send a positive message to Dr. Lipkin. Just some thoughts rolling around in my head.

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It's not a popularity contest. If you look into it and you think the study is good or bad, voice your opinion. If you don't care or don't have an opinion, why do you care if other people do and are registering it?

Dr. Lipkin would not be opposed to those who wish to write letters of support for his current and future research into ME/CFS to the individuals whose addresses were mentioned in my original post on this thread.

This is what i think the majority of us want, no matter what country we are in: OUR LIVES BACK

...how do we get them back?
through treatment that relieves of us of our miserable symptoms and allows us to live pain free and energized.

Right now, whoever gives me that chance at life again is who i am for.....

for the past 2 years it looked like perhaps judy m and wpi were going to give us that...now it looks like cfi, lipkin, hornig, enlander, singh, schadt (sp) klimas, broderick, peterson and his bond university team, montoya, kogelnik, levy?, the norwegians, dusty miller may bring us that....

i'm for finding out how to get better (preferably in a way where i don't have to get deathly ill before starting to see improvement.)

for some reason my intuition is that lipkin is going to lead us out of the darkness...but like i first said i dont care who it is: just that it happens and it happens fast....

i am extremeley greatful and relieved that there is so much research and interest in the disease right now.....

i do think credit must be given to judy m and wpi for shining such a strong light on this long forgotten/abused/ignored corner of illness and getting us this attention and research, so thanks to judy and wpi....but now you have created a big, ugly mess that is only detracting from the speed that a new treatment will come to fruition.....so if you really care about the patients like you say you do, get out of the way and let the scientists who are not embroiled in drama and controversy and who have money get to work.....i want my treatment and i want it yesterday!!!!!

and WPI if you have found treatment that helps andrea and others, i think you should be transparent and share it with the public and dr's who are treating ME/CFS patients....over the past month 4-6 ppl that we have heard of (so there may be many more) have died or become even sicker because of this disease...if there is a way to save a life now, please share that information...otherwise you are choosing to make money over saving lives....not cool

and i do agree that there about 5-10 ppl on the various boards who are stirring up shit and making us look like looney tunes and i'm sick of them and wish they would shut up...but they won't, and they don't have too; so i'll just ignore their noise. just as i hope a truly professional, scientist, researcher or dr. interesting in helping millions of ppl live life again would. i hope eco's comment are not true because if researchers are tuning away from saving lives because of a few loud mouths that is truly sad (and very immature and unevolved emotionally)

what do we want: TREATMENT(affordable, covered by insurance treatment!!!!):victory:
when do we want it : NOW!!!!!!

thank you to all the new and old researchers coming to the field and working on the disease!!!!!!!

I also hope there will be cooperation and teamwork amongst all these new research groups nad transparency in their work and their findings.

MOD - Please learn to disagree without baiting and insulting each other!

I think there is a little too much heat in this thread, so for the sake of preventing continued arguments, I'm closing the thread for now. I think Eco's last comment is adequate, anyone who wants to support Dr Lipkin's work has the info to send a message. Beyond that we are wasting our energy I think arguing over the patient politics of this illness... please, more constructive discussions?

IF someone thinks of a valid reason to continue this thread, PM myself or another mod. I just can't think of any useful outcome for keeping this one going...this is closed due to the conflict, not the topic or anyone's position or expressed views.